Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Iron Infusions - What To Expect & Any Tips?
0

7 posts in this topic

I am scheduled for the first of my iron infusions on next Tuesday Feb 5th, and a bit worried. Have read horror stories of bad reactions. (but then again some people say its easy as pie!)

From anyone whos had it done, can you advise any tips?

Are you dopey at all from the benedryl? Can you go to work afterwards?

Do I need to remove my nailpolish?

Go in on a full or an empty stomach? Bring a drink or snack?

Thanks everyone!

0

Share this post


Link to post
Share on other sites


Ads by Google:

I had an iron infusion many years ago (before I was diagnosed) and it was fine for me. No reactions whatsoever, but the benedryl did make me very tired and loopy - in fact, I was so loopy that I started hitting on the very attractive pharmaceutical rep that came into the office that day - trying to incoherently talk to him as I'm hooked up to these IV's hahaha (I was probably about 20 years old at the time). I personally would recommend taking a sick day off of work and just rest afterwards in case you notice something or dont feel well for some reason. The infusion takes a while, so bring a book or something to do - I remember it taking 3 or 4 hours but I could be wrong. They gave me something to drink, and I dont remember them telling me that I needed an empty stomach, but check with your doctor anyway. Again, it was fine for me, so I wouldn't worry too much!! Good luck!!

0

Share this post


Link to post
Share on other sites

Hi Kristen,

It was not painful! If it felt at all uncomfortable, they just slowed the drip and gave me Benadryl. I took a pulpy Acai very healthy drink in with me that helped my energy levels. At the hospital, a volunteer would come by and take our lunch order (this was before I knew about Celiac).

I would just come home and sleep afterwards. You might want to take the day off? Especially if you're woozy.

I had 10 infusions within a month a few years ago because that's what my (fired) hematologist said was possible and it's difficult for me to pass up a challenge. :/

Here are the things I took away from it:

1. Be sure to stay for 30 minutes after the first infusion is finished because, if you have a reaction, you'll want to be in the office rather than speeding down a freeway trying frantically to get home to the bathroom! (Or wear a diaper.)

2. A simple remedy to having a reaction is to slow the drip. The nurses at the hospital where I received the remaining 9 infusions seemed to be very well aware of this. They were great! My first infusion took 1 1/2 hours (that's way too fast but not sure how much iron you're receiving). My subsequent infusions took 4.5-6 hours.

3. Do not aim for 10 iron infusions within a month if you react to the first one. This is not a competition. Your body is telling you something.

4. Benadryl is nice and makes the ride smoother.

Anyway, do not fret. Watch a comedy tonight or do something fun. Take food with you. I would make it a day once I understood about taking it slowly. Surprisingly, I never watched the movies I had downloaded but would end up chatting with the people receiving chemo. I never met a rude person there. Nurses were great/patients were great.

Let us know how it goes for you & good luck!

Take care,

Cali

0

Share this post


Link to post
Share on other sites

I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!

0

Share this post


Link to post
Share on other sites

Hello,

I'm new to the circuit, but I can give you a view on iron infusions with the chemical called Faraheme.  I received two IV injections over a week apart.  The nurses will establish an IV line and administer the drug through the line, slow push.  I relaxed and read post injection.  They will monitor you for at least 30 minutes post to watch for reactions.  I had very good luck with the injections and felt much better within 3 weeks as far as energy levels and stamina were concerned.  The only drawback I had with the injection is that I couldn't have an MRI (the results could be inconclusive for 90 days after iron therapy).  I needed one for a possible orthopedic procedure and had to wait.  I did not have benedryl pre-injection.   The Faraheme has a very low reaction incidence.  Good luck!

0

Share this post


Link to post
Share on other sites




I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!

I'm so glad it went easy peasy :). It sounds like they know what they're doing!

0

Share this post


Link to post
Share on other sites

I am scheduled for the first of my iron infusions on next Tuesday Feb 5th, and a bit worried. Have read horror stories of bad reactions. (but then again some people say its easy as pie!)

From anyone whos had it done, can you advise any tips?

Are you dopey at all from the benedryl? Can you go to work afterwards?

Do I need to remove my nailpolish?

Go in on a full or an empty stomach? Bring a drink or snack?

Thanks everyone!

I hope your iron infusions are going well.

 

I had the first try iron infusion around 2005 - had an anafalactic (sp??) response to the test dose, BP dropped to 20/40 and they nearly lost me - it was the kind of iron that takes awhile to infuse.  So, I didn't have that infusion.

 

In May of 2007, I went for another try because there is another formulation that they don't have problems with and it takes a lot less time for the infusion - I went once a week for 5 wks.  I was very sick for about 3-5 months after, but I cannot say with certainty that it was the iron.

 

Because of the celiac, which I was just diagnosed with last week, the iron infusion didn't really do much good.

I am actually considering going for this again after I've given my body time to heal so that it can absorb the iron properly.

 

I wouldn't go on an empty stomach.  My dr's office had snacks and beverages, but nothing gluten-free, so BYO!

The benadryl didn't make me dopey and I could go about my daily routine upon leaving the dr's office.

Don't even think about taking off your nail polish!

 

How long have you been on the gluten-free diet?  Did your dr. recommend the iron infusion?  I'm wondering at what point to revisit this.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined